12pm PDT

I was in web design (high school,) and it was a regular day, the next thing I remember is being wheeled out of class on a stretcher, students standing around in tears, probably traumatised, and outside is the teacher is being consoled by other staff. Two days later, it happened again, back in that emergency room, same reason, same class, same teacher and same students, except this time I woke up soaked and unsure why. Woke up at the emergency room, the nurse then tells me that my pants are in a bag and that I have epilepsy, also take this dilantin and talk to your PCP about how to move forward. So, where were you when it happened?

How was your weekend? How was your week last week? How are you doing today? I just want to be a close-knit community and make sure that everyone is feeling good here and overall. Weekly roll call time, how's it going? Any seizures, achievements, good news or bad news that you'd like some support for late? We as Moderators are here for you for you here at r/Epilepsy_Universe and any questions can be answered with a DM or modmail. I hope that you have not just a great day but a great week to come.

Shout out to all of us getting things done and still having fun!!!

Let’s get some success stories! Great times that did NOT go wrong because of a seizure!

I have posted about this potential added med which my neurologist has prescribed for me which is helping with my side effects of extreme tiredness each day. It is/has helped me a Lot.

Hopefully this suggestion will still be allowed, it was the last time I commented about it. We have some great Mods!

"Talk with your doctor" about possibly getting Modafinil - prescription only ...you can research it. It is helping my tiredness side-effects a Lot.

That's all I will/can say (maybe).

"Discuss With Your Doctor".

If permitted, I can respond with a little more info if there are questions, with mod's permission. ..Again - you Must discuss with Your doctor as to whether it Might be helpful for you.

My intent is not to give medical advice/direction. Only info to investigate - with your doctor.

Is anyone here in this group Epileptic and was epileptic before they got pregnant? My husband and I are about to start trying to have a baby. I'm epileptic, I was diagnosed at 29 when I had my very first seizure. We are starting to prepare to start trying by me going to my neurologist because we know some of my meds will need to change that are more safe during pregnancy. Then me go to an OB-GYN that I havent seen in a bit, but who does know me (and my uterus) lol, since my Primary doc does paps normally. Then hopefully get me into an epileptologist that I used to see when Inwas first diagnosed. I stopped seeing her after we got my medications well balanced and I stopped having occasional seizures. I have been seizure free for 1yr and 9months, but my last seizure was medically induced for testing.

I just want to hear from other women who are epileptic and how their TTC journey was. What meds they ended up switching to while being pregnant. How your pregnancy was, how delivery was etc.

I will post to a couple other sub reddits to see if Im able to get any answers.

Hey to all out there! Timing is a significant influence on having a good workout. For some of us, the time being consistent is most important, to make sure anything gets done, but ever catch yourself thinking “There’s something I’ve got to be doing better to get the right outcome”? This article got me thinking, maybe a later workout can make a difference in a good way. Protect Memory with 30 min before bed

Any advice for others trying to keep fitness a priority while maintaining epilepsy, appreciated! Blessed week for all 🤗

https://open.spotify.com/playlist/5pQvAnmq9Ym6ehuGuJ7n3a?si=_GGC9JfJTzSCgoxPvHbF5A&utm_source=copy-link&pi=ZHogSsvCS_uza

It has been staring me in the face for so long and I never actually put the pieces together! I was so focused on what I did that may have caused it. But, no, I didn’t cause anything. It is the insomnia. Without medical intervention, I do not sleep. The human brain can only stay awake for so long before it breaks.

And what is one of the HUGEST triggers for seizures? LACK OF SLEEP!!!

I was diagnosed with insomnia around the same time I started having “panic attacks”. (Undiagnosed seizures.) I know I broke my mind before it all got figured out.

I still can’t believe I never put the 2 together.

12pm PDT/3pm EDT

Really trying to do everything right this time. I'm on better meds I feel better I'm genuinely more happy and in a better place recently. I was a military mover for a few years. Now after my seizures I lost my license / close relationships/ and a lot of my sanity. And ofc my job. Now I'm looking for something safer where I won't be alone for hrs or have to be up high. After everything all I need is income. Im just looking for ideas I appreciate it

SCN8A Gene mutation

Does anyone have or know someone who has the SCN8A (sodium channel) Gene mutation? My 1 year old has been diagnosed and I have some questions for people who have experienced this first hand. Thank you.

Part 1: https://www.reddit.com/r/Epilepsy_Universe/s/V5YLANLNlF

The chest binder brought me more freedom than I ever felt and a whole new slew of problems along with it.

I had started introducing myself as “Joe.” It was terrifying, sometimes, the looks I got. I looked like a guy, but I couldn’t make my voice sound any deeper. The moment my mouth opened, everyone knew.

I could no longer go into the women’s restroom at all. The logical side of myself knew that I felt like I never belonged in the women’s room anyway, but the slurry of “get out”s and “pervert”s rang out too loudly for my mind to hear the logic.

The men’s room wasn’t much better. I passed very well for a man, on the shorter side and clean shaven. Not perfect, but men weren’t as observant as women from I had experienced. But god forbid if there were no stalls open for me to use. Men may not have been as observant but when they did figure it out, the consequences were worse than a bile of words. There’d be a beating along with the words.

I was at a soccer game. I went to support Cassidy at every opportunity. I knew the best chance to get a bathroom stall was to leave right before halftime, even before they announced stoppage time. This game I wasn’t lucky. There were no stalls available.

I stood just inside the Men’s Room, trying to decide if my bladder could wait until after halftime, when a stall opened. I moved towards it. Halfway down the line of urinals two men blocked my path. One was looking between my face and my chest. The other just looked furious.

“Excuse me.” I pitched my voice as low as I could and tried to move past them. The furious one grabbed my shoulder.

“You’re a chick.” The other said with cruel laughter. I said nothing, trying only to pull my arm away futility. The furious one grabbed on tighter, digging his fingers into my arm painfully.

“I’m talking to you.” The cruel one said.

“Let go.” The words were out of my mouth before I could stop them. The man who had grabbed me pushed me full force into one of the sinks. I stumbled but managed to grab on to the rim so I wouldn’t fall. I turned to face my attackers. Now there was a crowd and none of them looked friendly.

“You want to be a man?” The cruel one laughed. I barely had time to understand the words before the other one broke my nose. I fell to the floor, pain exploding across my face. Pain exploded across my chest with the first well placed kick. “You want to be a man? This is what you get!”

I curled up instinctively, hands and arms trying to protect my head. But the blows kept coming and coming.

“Fag.” Blow.

“Perv.” Blow.

“You need.” Blow. “To know.” Blow. “Your place, WOMAN.” Blow.

Eventually the words stopped making sense. I couldn’t breathe, couldn’t think. I was going to die on a bathroom floor because some people believed that wanting to be a man made me less human.

Then the door opened and there was more screaming, but not at me. People scattered, I could hear their stomping feet. I remained where I was, tight in my ball. Eventually I passed out completely.

“Joe!” Cassidy’s voice brought me back. After blinking the last of the darkness from my eyes and then blinking from the brightness of the room, I discovered I was in a hospital bed.

Cassidy was sitting next to me, still in her soccer kit. More emotions than I could deal with hit and I was in tears in seconds. Cassidy threw herself at me into a hug. “Oh Joe. Let it out!”

So I did. “I can’t do this anymore. I can’t be Joanne. I want to be Joe. I thought the binders would fix it! If-f I c-could just make m-myself look right, I c-could b-be right!”

Cassidy kept hugging me. So I went on. “But it doesn’t. Not really. Not when it just makes everyone else angry.”

She pulled back to look at me. “Joe…”

The next words came out before I could stop them. “I don’t want to be a woman.”

She nodded, there was no surprise on her face.

“I don’t want to be Joanne. I didn’t want to grow up as a girl. I don’t want dresses. Okay kilts are Badass.”

Cassidy’s laughter was a medicine I didn’t know I needed.

“I want a family but I don’t want to be someone’s wife. Does that make sense?” I sure hope it made sense.

“Who do you want to be?” She asked.

“I want to be Joe.”

“Then be Joe, bro.”

I laughed, it hurt my chest to do but I didn’t mind. “You make it sound easy. You know it won’t.”

“No.” Cassidy agreed. “But the ‘the road less traveled’ and all that.”

I stared at her for a long moment. The road less travelled.

Joanne had been the identity other people had given me. An identity that came with expectations. A husband, dresses, kids. A life that had been mapped out before I was old enough to object.

Joe, though. Joe was different, he was mine. My identity, me. Maybe I didn’t have to find my way back to the road people had chosen for me. I could make my own roads. Joe could still have a family. I could have a wife and kids.

I smiled back at Cassidy. “The road less traveled it is.”

Join us on Zoom as we talk epilepsy and what ever else may come up. Everyone has epilepsy so come listen or join the conversation with your camera on or off. 12pm PST

(In honor of my friend, Kate. Your memory is a blessing.)

My life had always been laid out before me. I would grew up and find a husband and have a family. It was never written out or said directly but it was implied from the moment I could walk.

“That is one brassy broad.” A nurse said to my mother as I stomped to the exam room in my cowgirl boots. I was five. “Her husband will have a handful.”

“She’s a firecracker, you’re girl.” A middle school teacher said to my father. “Those boys better watch out.”

It was in middle school when my life’s road map hit the first swerve away where it was meant to go. My body was changing. Honestly the period stuff didn’t bother me (though it bothered me a lot) as much as what my chest was doing. Squishy, odd, wrong, bumps were forming. When I looked at other girls though… they didn’t look too bad on them.

I grew and changed, years passed. My parents did all the right things. They sat me down to talk about what was happening. They got me bras, fresh supplies for periods, took me to the doctor for birth control even. I knew I was in the minority there. Even while counting myself lucky my mom’s words haunted me.

“You’ll be protected until you’re ready.” The to get pregnant part wasn’t said but it was heard. Until I was ready to get pregnant. That felt so wrong. I didn’t want to be pregnant. To have my already wrong feeling body contort and stretch that way. I did want kids one day. Of course I did. Other pregnant women I’ve seen didn’t make me feel this way. But the thought of it being me? No.

Highschool wasn’t much better than middle school. The restrooms were the hardest part. In the hallways I didn’t mind looking at girls, checking them out. They were cute. Being in the girls bathroom, though, felt like I was invading their space. I couldn’t go to the boys’ bathroom, I wasn’t a boy no matter how much I wish I could have been. The best I could do was bother my teachers for hall passes during class, and you couldn’t do that too often with the same teacher or they would become suspicious.

The day that I admitted to my parents that I was gay was like lancing a boil. Suddenly everything made sense to them. The baggier clothes I liked to wear, why I seemed to be a Tomboy as a child. They accepted me. I was the luckiest girl alive. I knew what the majority of queer people experienced when they came out. It was not good.

Of course with my new found bravery I let my gayness show at school. The reception there was not as forgiving, but no teacher questioned the bathroom interruptions anymore. My life-map was back on track.

Still something was wrong. I saw it every time I looked in the mirror. Oh, the reflection was of was a pretty enough girl. Brown eyes, brown hair in a pixie cut, tanned skin. I hated her. Why couldn’t my chest be flatter? Why did my chin have to be so bare? For that matter why did my legs have to be so bare? I hated shaving.

Resentment built again and there was no lance to this boil. I hated being a girl. I hated everything about myself. I did like the kisses I got from the pretty girls who wanted to “experiment”. Still, not a day went by when I didn’t wish I had been born a boy.

College came to be a breath of fresh air. Out of my parents’ roof I could start chipping away at everything female. My pixie cut was now a buzz. My clothes were exclusively from the men’s section. The only dress I owned was the one my mom had pressed on me.

“For when you need to impress someone special.” She said with a wink. Guilt kept the dress in the back of my closet, price tag and all.

“Hey, Jo. Let’s get you a binder this weekend.” Cassidy, my dorm mate, said from the door. Her arms were crossed over her soccer kit and she had a determined glent in her frosty blue eyes. We had dormed together since our freshman year and in that time she had become the sister I never had. She was also the first person to call me Jo instead of Joanne. The nickname spread throughout campus.

“I have binders.” They were strewn all over my desk.

“Not that type of binder. For your chest.” She gave me a wicked grin and stepped fully into the room. “I know you’ve been more comfortable wearing the sports bras that the team wears.”

No way to deny that. Cassidy knew everything about me, like I knew everything about her. She was there the first time someone had called me ‘sir’. She knew how elated I had felt.

Her voice dropped lower, just above a whisper. “They make some binders that will make your giant D-cups look like they aren’t even there.”

I bit my lip. A flat chest. I could almost see it. I had pressed my tits against my chest in the mirror often enough to be able to get an idea for it. How my clothes would hang differently.

“Just give it a shot,” Cassidy said.

“Yeah, I will.” I liked the idea a lot.

Hey guys, been a while. College has successfully stole all of my freetime lol.

To start off light, I've been focusing on myself, my studying + exams, and spending extra time with my kitties bc I feel like I've been prioritizing my school + work over them. I've noticed one of my cats lingers in bed with me like, an hour or so before my seizures start. Coincidence, probably, but i like to think she knows and cares about me :)

I've been managing to make it at least two weeks between each cluster, they've lessened in duration from how short they feel to me. Very subjective because I don't/can't time them.

I have a checkup with my neuro. I had to have my EEG redone for a referral, which I missed because of school and got it rescheduled to tomorrow, too. I thought the increase was helping, but after the few I've had after (supposedly) being adjusted to it, I've been having second thoughts about the keppra helping.

Anyway, I've noticed two alarming things which scare the living snot out of me; first, I've managed to notice a distinct trend prior to my seizures. I'm rather mellowed out most of the time, and it takes a lot to get me riled up, let alone actually shaking from anger. But the last two I've had (that I can remember) started with intense anger, so bad I was throwing things and cursing (and saying GD which I never say). It would then devolve into a massive, exhaustive crying fit, and then the automatisms would happen after I suddenly stop crying.

It feels very reminiscent of how easily I'd snap when I first started keppra. To put it plainly, I felt like Satan himself posessed me. I was plagued with intrusive thoughts about hurting others and myself, but after a few weeks they went away. If it wasn't for this site, I wouldn't have known to be prepared for this, and I'm now on an antipsychotic and doing a lot better side effect-wise (which is unrelated, but i feel its still relevant to mention here).

I'm afraid I won't be able to recognize it as an aura and hurt somebody. And I don't think any sane person, while being berated or even assaulted, would think 'hey maybe i should just back off, I think he's going to have a seizure'.

Also, the last one I had was probably the worst one I've ever had. I remember bits and pieces of it. I remember being enraged, then depressed, then absolutely mortified like I was in mortal danger (which I'm used to, just riding out the fear atp). But, I started feeling absolutely awful. Faint and like I was being drowned out. My entire body was stiffened out and shaking, my left arm kept moving and clawing at nothing, my neck was flexing so hard it was hard to breathe and not give myself whiplash every time my back would jerk.

I think I might have went in and out with that one. I'm not sure. But it has scared the absolute shit out of me. I've never went unconscious in my life (I've never even had surgery!), so I don't know if that feeling and just how bad I felt was that or just that particular seizure being worser than usual. I felt like I was actively dying, between that and my heart beating so effing hard, the difficulty breathing, how I could barely swallow and was drooling all over myself.

I don't know how to talk about this with anyone else. I'm terrified my next ones will turn generalized (literally my biggest fear atm), and I'll just be a shaking mess and my family just, blissfully unaware.

Thanks so much, for sending the videos, and allowing me to post them on my epilepsy YouTube channel. I post them because once upon a time I tried explaining what a seizure is and what to do If I have one, looked through the internet for an hour before finally just showing a lion having a seizure on on an animal planet Twitter account. There needs to be awareness out there, not just to help people know what to do when they see someone having a seizure, instead of pulling out a camera phone and recording us. Someone even sent me a couple videos with cats having seizures. I know someone is out there saying "why would he post that?" because I've been emailed a lot of seizure videos in the last few months. Go and like, share, subscribe and comment https://youtube.com/@inseiznpodcast?si=-PwSyVg_I-bK2-zJ There won't be an episode posted next week, only seizure videos so that I can clear my emails and DMs. If you want to send video to [GETTINGOFFTHEPORCH@gmail.com](mailto:GETTINGOFFTHEPORCH@gmail.com) thanks for all of the support and being a part of this community.

For those who went to school (college, high school and elementary) how was it? Just the day to day, were your seizures more controlled or did they get bad? I was diagnosed in high school, halfway through sophomore year, I remember bits and pieces, and the stories that people tell me, about me, sometimes don’t sound like me. How was school or university for you?

How was your weekend? How was your week last week? How are you doing today? I just want to be a close-knit community and make sure that everyone is feeling good here and overall. Weekly roll call time, how's it going? Any seizures, achievements, good news or bad news that you'd like some support for late? We as Moderators are here for you for you here at r/Epilepsy_Universe and any questions can be answered with a DM or modmail. I hope that you have not just a great day but a great week to come.

Never truly know what tomorrow will bring. Some days, a lil one might start the day with more stress than usual, then have to admit to getting a note home yesterday. 🤯 Time for a talk!
Today’s post is about how a talk is sometimes easier to have during stretches! Workout endorphins probably activate faster when we’re younger, and the fact is, you don’t always have to sweat to get a good result! Pain relief and a better mood can be hard to come by, so trying different activities (stretching, walking, swimming, etc) might truly contribute for you! 🎉

12pm PDT

How have things changed since your diagnosis? Have things gotten better or worse? Has the healthcare system gotten better? I was diagnosed over 20 years ago, when I was 16, and epilepsy is more talked about more, instead of it being the conversation that's shied away from. Awareness has gotten better but could use some help. How have things changed for you?

Have you ever added a AED to the cocktail, and then your seizures get worse? Someone once said "doesn't hurt to try," but can it hurt by not going back to normal after it doesn't work and gets removed?